I'm Hooped...need some prayers or a shoulder now too.

**Katie** · 09-28-2009, 08:07 PM

Hi all,

I've been quiet the last while, busy with our art guild's annual tour, but also waiting for the results of my metal allergy testing that I ordered a while ago.

I just got the results tonight, and I think I'm hooped for surgery, possibly of any kind depending on what my surgeon says.

The blood test states that I am highly reactive to almost every metal used in ADR, and lots that aren't: Aluminum, Chromium, Cobalt, Molybdenum, Nickel, Iron, and slightly reactive to even Titanium if you can believe it. That accounts for the huge nasty lump and rash I got several years ago after an Iron injection when I was anemic. It covered my entire thigh, and the doctor was stunned at the reaction.

Soooooo, I have no idea where to go from here. After four years of battling with the insurance people to get surgery, it turns out I can't have it anyway I guess.

Liz, I want to thank you so very much for recommending this test. I can't imagine how miserable I would have been if I'd gone ahead with the surgery and had to have four or five levels ripped out, if they ever discovered what was wrong.

Does any one know what the hardware for the fusion is made of? Titanium for sure, no? Stainless steel, which has Nickel? The manufacturers would not give me the details of the metal content when I requested it a few months ago. My dear husband asked jokingly (sort of) which pillow I would prefer to put me out of my misery.

I haven't melted down yet...and I hope I can hold it together when I talk to the surgeon. Maybe he has some miracles up his sleeve. He was very worried when I mentioned that I was sensitive to Nickel at our first consult. This should really blow him away...being allergic to all of the metals.

Anyone have a big shoulder?

**Justin** · 09-29-2009, 12:02 AM

Originally Posted by Katie

Anyone have a big shoulder?

Katie, I am so sorry that your metal sensitivity profile came back unfavorable.

We will talk tomorrow and my shoulder is all yours.

**Cindylou** · 09-29-2009, 09:17 AM

Awwww, Katie. Crap. This totally sucks. My shoulder is here too. I'll PM you my phone number, k?

**KBear** · 09-29-2009, 09:22 AM

Oh Katie, I am so sorry. I'll be praying

that your doctor can come up with some solution for you. Maybe, someone before you has had this problem and had a doctor come up with a solution and you or your doctor could find that and do the same?

There has to be something that they can do.

I know this is a huge blow and I am here for you. You can cry

on my shoulder and I got a big box of Kleenex too. I know how knocked down I would be with each denial or setback

(that each seemed like the end of the road), so I can't imagine what you are going through right now. I'm crying

typing this, just thinking about it. I'm glad that you have a supportive hubby and all of us to help you get through this. Call me

if you want to talk (yell, scream

, whatever); but I completely understand if you don't feel up to it. I'm praying for you

and sending hugs

Kathy

**Dave** · 09-29-2009, 11:01 AM

Originally Posted by Katie

I can't imagine how miserable I would have been if I'd gone ahead with the surgery and had to have four or five levels ripped out, if they ever discovered what was wrong.

Katie, I am so sorry about your results.

We are all glad you did this allergy test first, so what you mentioned above did not happen. That could have been really bad. Keep your spirits up. There has to be something out there that will work for you, if not now then possibly very soon.

**ajj1001** · 09-29-2009, 11:26 AM

Here for you

**Graysonlaw** · 09-29-2009, 11:41 AM

Boooo! But keep your spirits up. I've read of possible fusion without instrumentation, so there may be options . . . .

Pete

**dalhousie** · 09-29-2009, 01:21 PM

I hope you can get to see your specialist soon to talk this through. There must be something out there that can be done to help you. It's a good job you had this test though. Earlier on this year I was originally offered an all polyethylene implant called the Embody by Nuvasive but it was a trial situation in the UK only as far as I know. The surgeon did adapt it by placing a screw through a loop in the implant as some had come out of position. It may be hope for the future.

Thinking of you.

**Katie** · 09-29-2009, 09:59 PM

Ruth, that is wonderful information! My hubby asked if there were such a thing, but I hadn't heard of it before your post. I'm a bit confused though. Are you saying that you had it inserted, and it needed an extra screw, or that they were just coming out in the UK now, but that you declined to have it?

For the rest of you who also offered such wonderful compassion and hope, I want to just say thanks from the bottom of my heart. My hubby is actually much more stressed than I am about it....I actually expected it in a way, but maybe not on quite this grand a scale

Hubby kept waking up with bad dreams last night, saying things like...we can make it out of wood! Or a rubber mat from the barn, or.......

. I've got to come up with an answer quickly so we can both get some sleep!

Greysonlaw, can you give me some more information about that fusion without instrumentation? That's intriguing.

You know, there is a bright side to all this. If I had gotten my surgery in Germany when I wanted, I would have been in a heap of trouble now. Because of the delay, I discovered this tiny detail, and now can make other arrangements (of course I can, right??!!)

There may be some trials out there that we just don't know about yet, and someone on another board suggested that there may be anti-rejection drugs available for this sort of thing, like there are for organ transplants. Brilliant, right? And definitely worth investigating.

Always a silver lining...and this is just another interesting chapter on the book I'm building about this adventure. It should be a best seller in the Fiction section of Chapters

Truth is stranger than fiction, isn't it?

And I forgot to add, that I'll call you two tomorrow, Kathy and Cindylou. Thanks a million.

**Graysonlaw** · 09-30-2009, 08:07 AM

Originally Posted by Katie

Greysonlaw, can you give me some more information about that fusion without instrumentation? That's intriguing.

Obviously, I have no idea whether this would even be appropriate for your condition, but in my research, there has been various discussions regarding fusion without instrumentation. I can't find the best article I found, but here is at least one web site that mentions it: Spinal Fusion without Instrumentation and Implants

As you probably know, very early fusions were all done without instrumentation. It usually required a body cast, months of bed rest, and extreme caution in moving much at all. Success rates were no more than 50% until proper instrumentation was developed.

Of course, I learned all this on the Internet, so I really can't vouch for its validity -- but is sounds relatively accurate!

Pete